Hi there - am a newbie and don’t really know format etc and am just learning.
I am in between a rock and a hard place at the moment. I have been off work for approx 10 months due to onset of what was diagnosed in May as chronic migraine - silent That much information was gleaned, ie. neurologist told me it was due to migraine - I have since then gone on the internet and looked it up learning so much more. I now think that I have chronic silent migraine/acephalgic but it seems to be more vestibular.
state of play re onset of symptoms - migraine with pain history over the last seven years or so, seemed to be a pattern of a saturday, a decompression if you will. I had a stressful marriage, financial issues, busy job and life. It made sense to be decompressing. Triggers at other times seemed to be missing meals, emotion. Presentation was often right sided, pressure behind the eye - not always the right, sometimes left. The pressure/pain would build and spread throughout my skull and the pain/nausea would render me immobile for a time in the hallway on the floor or in the bathroom. Some relief would come from vomiting and then I’d be able to get to bed to sleep. I’d feel exhausted after I woke - say three to four hours later, but relieved of the more intense pain. The migraines seemed to reduce in frequency for approx three years and then in 2012 from summer onwards returned. Approximately one bad one in every few weeks period, with lighter migraines in between. The last two in November/December timescale (hormones do seem to play a part but not defining) were particularly bad with light and sound sensitiity, on the bathroom floor for around two hours, severe numbness/tingling in the face and right upper and lower body. vomiting did not relieve the nausea/pain i.e I couldn’t vomit beyond wretching, and when I did there was still no relief. Got to my bed eventually but was still there when I woke.
January time came and I was hit with dizziness, nausea and wretching, vomiting regularly. Thought it was a bug, stayed off work for a week. It didn’t so I returned. Throughout the next three months the pattern of wretching and vomiting continued up to 15 times per day. In that time due to pins and needles and body sensations I had a head ct and mri, was sent to stroke consultant, had full body Mri - all clear. In april I was admitted to the hospital due to severe pins and needles, I thought I was possibly at risk of stroke. All down right side mainly with numbness in the face and legs particularly. Grip strength was affected. I had problems with aching neck and back shoulders, speech, word finding and generally slow cognitive processing.
After being discharged after a night I thought I would return to work however the fatigue and dizziness were very bad. My balance has always been bad but the dizziness made it worse. The fatigue built up until I was sleeping approx 13-14 hours and then 4 or 5 throughout the day. Dynamically I was affected but it seemed to be so much worse sitting, to the point of lying in the chair. My muscle tone seemed weaker and I could not hold my head up. A conversation sitting at a table was exhausting and my throat was sore. there was aching in my oseophagus and throat and mouth and shoulders and I would crumple’ after a ten minute conversation, having to go to bed. this has continued throughout although is not as bad at the moment. i went onto ibuprofen to relieve the pain which I’m still on.
I’ve cut out cheese chocolate sugar and caffine, and marmite. this seems to have helped the throat/mouth sensitivity. In june I was prescribed topiramte 100mg which i was on until mid december. I made the decision to come off the medication as the side effects exacerbated my symptoms. no appetite - crying constantly for the time I was on it, laterally having mind blanks and couldn’t say beyond three words without forgetting what i was saying or being able to see what i was talking about but not produce it in speech. I at times don’t understand what words are being said to me and switch words around or say the wrong thing. I think that part is part of the migraine attack but was made worse. The fatigue, breathlessness and constant aching were bad.
Since coming off the drugs i had two and half weeks of really great energy and such a change in my mood state, there is still anxiety but not as often crying, only crumpling when fatigued. However since then the symptoms are returning, the nausea, dizziness, light and audio sensitivity, aching muscles/stiffness. Pressure behind both eyes which is indicative of a migraine attack for me, dull migraine pain always present. One day in bed due to migraine. Nausea is increasing and I want to stop the pattern before it gets to the fatigue level and not being able to stand or sit as it has done.
My dilemma is this - I am a reductionist when it comes to meds, I don’t want to go onto duloxetine as my doctor is advising 160mg due to the horrible things I’ve read for what might be very little benefit. I have an apt with a homeopath on Monday but need to make an apt with gp as sick line is running out. I am so scared of going into a medical induced fog with difficulty as i did with topiramate, I would rather just deal with the symptoms to an extent as I can function just now however I can feel they are getting worse and desperately want to get back to work. I know as soon as I go into an environment where you are constantly switching between screens phones and situations that the vertigo will get worse.
I don’t know if anyone can help or advise me. My GP has been great but doesn’t really know which way to go other than duloxetine. I want the symptoms to stop, or at least to stop the progression of severity. I have an apt with the neurologist but not until 25th feb. Am currently seeing a neuropsychologist re concentration, attention, mind blanks and memory. He seems to think that there is a functional cause to my difficulty i.e psychological repression of things. It is frustrating because yes I do bottle things up but I have genuinely dealt with a lot of the issues in my life. This is a chemical/neuro thing and I just need it to stop.
I realise that in comparison to others who experience far worse re paralysis and pain etc my situation is tiny. but I seem to be educating myself via internet and not really getting anywhere re treatment. I realise that pharmacology has a place but am so scared of going onto duloxetine or any drug. Please help. I’m 30 and have turned into a mess of anxiety - although this is better. Apologies for the length.